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Medical / Dietary Needs

What you need to know

The list of possible medical problems in NF1 is quite long. Usually, each person has only some of the problems. The severity of any one of these medical problems varies widely between people. It is important to ask the parents about their child's medical issues.

Many people with NF1 have only the skin findings (cafe'-au-lait spots and neurofibromas) and Lisch nodules.

School age children wth NF1 may have annual doctor and specialist visits to monitor medical conditions.

The teen years are a time of change and this also includes changes in the issues of NF1.

  • Teens with NF1 may see neurofibromas appear for the first time,
  • Neurofibromas that are already present may grow in size.
  • Skin freckling may increase.
  • Changes in body image may result in an increase in depression, anxiety and social isolation.
  • Counseling may be helpful.
  • Some teens benefit from attending an NF summer camp or joining Youth CONNECT, an NF chat room and Facebook and Twitter connection.

Pregnancy may cause a rapid increase in the number and size of neurofibromas.

No special diet is required for NF1. A well-balanced diet is important.

Be aware, or ask a parent, if the child has a medical alert bracelet.

What you can do

  • A yearly check up and studies as needed should occur in the child’s Medical Home. 
  • Up to date immunizations are very important. Most children can receive live virus vaccinations. Recording information about the types of vaccinations given is important.  
  • Support good hand washing to reduce the spread of viruses.
  • Notify the parents of any changes in the child’s energy level.
  • Be aware of any changes in behavior or mood that seem unusual. Notify the parents.
  • Be aware of any unusual symptoms such as an increase in number or severity of headaches. Notify the parents.
  • Be aware of any academic changes.  Contact parents when differences are noticed.
  • Advocate for sufficient speech and language support so that the child can communicate effectively all day. This may include communication augmentation devices in some situations.